On August 4th, 2016, Charlie Gard was born with mitochondrial DNA depletion syndrome, a rare genetic mutation that causes weakened muscles, organ dysfunction, and other life-inhibiting symptoms.
Since October of last year, the terminally ill child has been at Great Ormond Street Hospital in London, England. He is unable to move or breathe on his own.
In June the hospital received permission from the European Court of Human Rights to discontinue Charlie’s life support.
However, his parents wanted to bring him to the U.S. to receive nucleoside bypass therapy, an oral medicine that can improve the function of mitochondrial DNA. The experimental treatment has never been used to treat Charlie’s form of mitochondrial DNA syndrome.
But, after an assessment from several doctors, Charlie’s parents have decided not to pursue the therapy, ending any possibility of the family transporting Charlie to the U.S.
“This is one of the hardest things we’ve ever had to say and we are about to do one of the hardest things we’ve ever had to do,” Chris Gard said on Monday, addressing the press on the steps of the U.K. High Court.
According to Gard, it was no longer in his son’s best interest to seek treatment.
Following the advice of several doctors, as well as the latest medical reports and scans, he and his wife have decided to let Charlie go and “be with the angels.”
“Our son is an absolute warrior,” Gard continued. “We will miss him terribly.”
“For Charlie, it is too late…treatment cannot offer a chance of success,” continued the Gard’s lawyer Grant Armstrong, standing before the U.K. High Court on Monday. Experts have said that the “window of opportunity no longer exists.”
Dr. Michio Hirano, co-director of the Columbia University Medical Center Muscular Dystrophy Association clinic and a professor of neurology at Columbia University in New York City, as well as a doctor from the Bambino Gesu hospital in Rome, evaluated Charlie’s readiness for the experimental treatment.
They found that Charlie most likely could have been saved if he were given the experimental treatment at an early stage of life, but “a whole lot of time has been wasted,” explained Gard.
Great Ormond Street Hospital (GOSH) recommended against Charlie receiving the treatment as well.
Before the Gard family decided against pursuing the experimental treatment, they received support from both President Trump and Pope Francis. Protestors have gathered in front of GOSH and the court to voice their support for Charlie’s parents as well.
However, according to GOSH, some supporters have become abusive. Ever since Charlie’s condition became an international story, hospital workers have received hostile messages, including death threats.
“In recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance. Staff have received abuse both in the street and online. Thousands of abusive messages have been sent to doctors and nurses whose life’s work is to care for sick children,” stated Mary MacLeod, the hospital’s chairwoman.
“Whatever the strong emotions raised by this case, there can be no excuse for patients and families to have their privacy and peace disturbed as they deal with their own often very stressful situations or for dedicated doctors and nurses to suffer this kind of abuse,” McLeod continued.
The hospital has been in touch with police regarding the threats.
Despite this unwanted attention and hostility regarding Charlie’s case, “the hearts of all at GOSH go out to Connie Yates and Chris Gard,” said the hospital’s statement about the Gard family’s decision.
The hospital not only seeks to support Charlie’s parents as they go through this extremely difficult time but also hopes to learn from the ordeal.
“In the months ahead, all at GOSH will be giving careful thought to what they can learn from this bruising court case,” said the statement.
Meanwhile, Charlie’s family would like privacy as they say their goodbyes to their son.
“Dark days lie ahead for these parents,” stated Armstrong. “They want to spend time with Charlie.”
